Dignitas or bust.

Towards the end of December 2018, but before Christmas, a good friend of my wife, someone she had known for close to 40 years died of Parkinson's disease. He had only been diagnosed three years previously but had a non-standard form of the disease.

My wife was very upset.

Then on the 4th January 2019, I got my diagnosis. Fortunately, it wasn't an exotic form of the disease, nicely bog standard and was told that I could hope for up to 25 years. With a good quality of life for up to between 10 to 15 years.

The wife was still very upset.

The other day, reading one of my favourite blogs, there was an obituary for one of the regulars, who had been diagnosed in her early 50’s with early onset PD. She was 62. So she got 10 years of life from diagnosis. By all accounts, for much of it, life was a difficult struggle.

62 is not old age and 10 years isn’t an awful lot.

If you google ‘PD life expectancy’ you come up with the answer “most people with PD now have a normal or near-normal life expectancy”. Which for a man in the UK is 79.3 years. So the Consultants estimate of 25yrs would give me a ‘normal’ length of life.

Yipeee!

Now I’m not ungrateful for the vast improvements in the treatment of PD and associated symptoms, but for many people, including any spouses and carers, the last years can still be vastly stressful and unpleasant for all concerned.

During stage 5, the end-stage of PD, sufferers will frequently experience a range of non-motor symptoms. These can include dementia, insomnia, hallucinations caused by the medications and, joy of joys, incontinence.

Quite a bundle of misery. This along with worsening motor symptoms, such as severe posture issues in their back, neck and hips, add up to a life that most of us would question if it was worth living.

So there we go, I’m going to advocate assisted suicide as a kind and ‘civilised’ way out when for whatever reason, life has become unbearable.

Except I have a problem, all my adult life I have opposed assisted suicide as an answer to this problem, for a variety of reasons. Am I now, because I am facing an end which has the possibility of being far away from “died peacefully, surrounded by his family, after a short illness” as it's possible to get? Because it now has the potential of impacting me, am I now going to advocate for Doctor-assisted suicide?

It’s interesting, how facing the reality of your position on a sensitive issue, brings out the inner hypocrite. And I am applying this to myself. Am I questioning my opposition to AS, because I am troubled by the argument, or is it because I am a coward and a charlatan?

It is amazing how easy it is to hold a strong opinion on something, that doesn't affect you, only others.

So I am now going to advocate a change in the law, to allow AS.

Except I’m not. At least not yet, maybe never, because the arguments against it, in my mind at least, have still to be sufficiently addressed. In 2008, Baroness Warnock who had a long career reporting to Governments on difficult ethical issues was interviewed by the Church of Scotland magazine, and said the following about elderly people suffering from dementia;

“If you're demented, you're wasting people's lives – your family’s lives – and you’re wasting the resources of the National Health Service”.

Quite a devastating and, on the surface at least, callous statement to make. And for the malicious, for those uncaring of their elderly, or looking forward to a healthy inheritance, but worried about it being used up in care costs, an argument they can use on a vulnerable and elderly relative.

And for those who say this is an unlikely scenario, not worthy of consideration, I would ask why would human nature be so different here? Why would the greed and callousness, so typical of many of our species, not be an issue?

Ahh goes the argument, we can put proper procedures in place. Which to me at least, shows a naive, almost childlike trust in those who will be appointed to design, run and supervise any such system of procedures.

Again human nature, being, frail, flawed and prone to selfishness, means full confidence in any procedure and safety net, will be very difficult, if not impossible.

So there we are, I’m not a hypocrite, I’m not abandoning my opposition, because it has the potential to impact me.

Except, you know, whilst I see the strength of some of these arguments, I am no longer so confident that they are strong enough. Many people die in pain, confused, frightened, or abandoned, who would welcome the relief of a painless, comfortable death. Are they to be denied? Do I have the right to stand in the way?

I no longer know. Why is life so bloody complicated?

Of course, whilst I have a glimpse of my possible future, it is still a long way down the road. It still feels, in many ways, hypothetical, not yet a real issue. I have still 22yrs left of the 25 the Consultant gave me. So at the moment, I think I am more at risk of being a bit of a drama queen!

But nagging away, whispering in my ear, is the question ‘how many years was Jane’s friend given’?  How many years, was the blog commentator with Early onset PD given’?

Sod it, I'm off for a pint.